Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Learning About Truncus Arteriosus, or Why We Love 4th Grade

As Charlotte began to realize that she would be be missing a significant amount of school due to her open-heart surgery, she asked us if we could have Dr. Young or Elizabeth Capella speak to her class. We’ve discussed this idea for many years, especially the thought of doing it in February for Congenital Heart Defect Awareness Day. Until this year, Charlotte has thought it a great idea, but she wasn’t ready.

This year, however, by the time we knew that she would need an intervention of some kind, she’d already been fielding a lot of questions about why she wasn’t running around on the playground (though it turns out that the pain she felt in her chest likely had no correlation with her heart).  She doesn’t like the attention and didn’t want to give misinformation, so we spoke with her teacher, the most excellent Alexandra M., and picked a date.

I was not able to be there, which still saddens me. But, Phil caught part of the day on tape:

What he didn’t catch were the kids’ questions. And he didn’t remember them all, nor did Elizabeth. But, here’s some of what he told me they asked:

  • Can kittens have heart defects?
  • Will Charlotte feel the surgery?
  • How will they get to her heart?
  • My mommy said that people can get new hearts. And even new brains. (Okay, that’s not a question, but it cracked me up!)
  • How do babies get inside their mommies?

Most importantly, in the naturally narcissistic way of fourth graders, many of Charlotte’s classmates told stories of their own medical challenges–asthma, allergies, glasses, broken bones–or those of their family members. As Elizabeth, Phil, and Charlotte told me about the conversation, I couldn’t help but grin–the kids basically said, Hey, Charlotte, we each have something going on. Your heart is different, it’s a bit scary, sure. But we aren’t going to think any differently of you. (Which was one of her chief concerns)

A couple of moms reached out to me after the presentation to say that their children were really interested, concerned for Charlotte, and learned a lot. One mom said that her son rarely tells her anything about school, but couldn’t stop talking about “Charlotte’s nurse.”

The students learned so much and their own hearts were so incredibly compassionate (another natural trait for fourth graders). Two of the girls conspired to throw Charlotte a surprise party the Friday before her surgery. The love they shared (and the gifts and sweets) really buoyed Charlotte’s spirits during the final countdown and have her super-excited to go back to school. And did I tell you that the class Skyped with Charlotte yesterday? Again, they had a lot of great questions, beyond “how do you feel?” and they blew lots of kisses.

IMG_0714Thank you, Alexandra, for fostering such an atmosphere of intellectual curiosity and camaraderie in your classroom. Thank you, Elizabeth, for going to school and answering a lot of questions. And, thanks to all of Charlotte’s friends for making her feel so very special.


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Post-Surgery Appointment (#CHDAware), or One More Step Back Toward Regular

It’s hard to believe that Charlotte has been home for nearly a week and that her surgery was two weeks ago. As long as the hospital stay felt at the time, it has faded into memory in some ways. (Though it was odd to go back to the 15th floor for a Children’s Service Board meeting last week, two days after she was released.)

We returned to Lurie Children’s on Tuesday for Charlotte’s post-surgical visit with the Advance Practice Nurse (APN), the most excellent Holly Adams (with a guest visit by Lindsay Jackson).

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In addition to removing her own bandages, Charlotte listened to her own heart. She says it sounds different than it did. The thump-swoosh rhythm seems stronger and faster. (Mom forgot her camera and the phone didn’t so well with hospital lighting.)

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I’m pleased to say that there is nothing of importance to report!  Charlotte is only on one prescription medication, Lasix. That dose was reduced by 50%, to be continued until we see Dr. Young in March. She continues to take Miralax and baby aspirin, the latter until we see Dr. Young and the former until at least our visit with the pediatrician next week.

Charlotte had already removed all the tegaderm bandages (on the arterial line, one failed PIV poke, and–yuckiest of all for her–the chest tube wounds). All that remained were the surgistrips over the wound.

Holly and I watched as Charlotte took the bandages off herself, slowly and deliberately and with strong intention. Unlike 2007, I did not take a photo of this scar for public sharing. It looks a lot better than it did at her first post-op visit in 2007.

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First post op visit March 2007. Skin still irritated from tegaderm around IV points and scar is dark pink. In February 2015, tegaderm irritation is all gone and scar is already light pink

 

Bottom line: Charlotte has been released from cardio-vascular surgical care. Her next hospital visit will be with Dr. Young. Her next post-op visit will be with her pediatrician.

She has been cleared to return to school on Monday with the recommendation that she do half days until we understand how tired she gets. (We’ve been hoping to build her stamina with walks, but the weather has not been cooperating.)


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Charlotte’s Story: The Road to a Healthy Heart

Sometimes I’m so proud of my kiddo, I could just burst. This is one of those moments. She was asked earlier this month if she would contribute a blog post to “Life Inside Lurie Children’s: The Official Blog of Ann & Robert H. Lurie Children’s Hospital.” Despite the month she knew she had planned, she said yes. And she said it without hesitation.  We talked a lot about what she’d write, but she didn’t start drafting it until February 14, just 3 days after her surgery. She dictated it to me.

So without further, ado, I invite you to follow the link below to read Charlotte’s Story: The Road to a Healthy Heart.


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A Day In the Life of Cardiac Surgery Recovery

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Why homeschooling at our house will never be a long term commitment.

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Qwirkle

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Mom’s Remedy

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More Quirkle

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More trash talking, I mean, more Qwirkle.

In all seriousness, Charlotte has been handling her confinement with aplomb. She’s been trying to get her schoolwork done without too much complaining, playing board games, reading, and practicing the piano a lot (it’s good for her post-surgery posture recovery!). And pretty much every night at 7:36 she says, “I need to go to bed. Now.” Then she sleeps for about 12 hours.

We finally went for a walk around the block yesterday–had to wait until the below-zero temperatures subsided. She also had a visit from a school friend yesterday. Today, another school friend visit plus a haircut (with a one block walk to/from the car) led to Charlotte abandoning a game of Qwirkle midway through for a nap. Charlotte never naps. It’s kind of against all of her principles (silly girl). But today, she passed out for about two hours, waking up only because Phil tempted her with wonton soup and we let her watch some of the Oscars (well, we let her sit in front of the t.v. and play video games on her iPod).

She’s running a  low-grade fever today–the first we’ve noticed. It’s only 99.1F so, we’re not too worried, but we’ll keep an eye on it.

She’s gotten all of her bandages off, except the surgistrips on the big incision, which the APN will take off on Tuesday.


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Home Sweet Home

It is amazing what a difference being at home and sleeping in her own bed makes. Charlotte has had two nights of uninterrupted sleep, 12 hours a night. She’s eating well and all systems are working properly, if you know what I mean.

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Taken with my phone, so not as sharp as it should be. Charlotte demonstrates the power of dry shampoo.

 

We have to be careful about keeping the surgistrips on her incision dry, but she was able to take a bath (with about 5 inches of water) on Tuesday night and has pulled off the big sticker that velcroed wires to her leg during surgery. She still has some bandages over her chest tube and central line sites. Her goal is to get those off by her APN visit next week.

Generally, she seems to be in no pain, just occasional discomfort. Her posture is hunched, crooked and concave. I’m hoping that improves quickly. To that end, I am encouraging lots of piano playing as she sits beautifully on the piano bench. As soon as the tundra-like weather lets up a little, we’re going to get out and walk every day. In the meantime, homework, piano, boardgames (with a lot of trash talk. Who is this kid?), movies, and lots of reading. She’s happy as a clam, and not too bored yet!

Happy Year of the Goat!


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Medical Update 6 Days Post Surgery

Current StatusSitting in the living room playing Katamino waiting for sushi to be delivered.

Medical UpdateSitting in the living room playing Katamino waiting for sushi to be delivered.

But seriously, Charlotte was discharged around 2:30 today. The day consisted of removing the central line, which was a bit difficult but not nearly as traumatic and traumatizing as any other removal has been. In between crying that she couldn’t do it, Charlotte breathed (deep breath in, breath out “sushi”), and  giggled at Despicable Me 2. Once the central line was removed, she had to lie flat-ish for about 30 minutes. Then we went downstairs for a chest x-ray.

After the chest x-ray, we waited for the prescription delivery and to get the last peripheral IV out.  That last thing is what took the longest, and what made me the most proud.

Charlotte hates having things put in or taken out (can you blame her?) and she also dislikes having medical teams hover around her.

So, she insisted on taking the PIV out herself. Her excellent RN, Katie, sat on one side of the bed, Phil an I on the other. While Katie walked us through the discharge instructions, Charlotte worked on the tegaderm surrounding the IV. She worked and worked, listening to some Katy Perry and Taylor Swift. She vacillated between “I can’t do this” and “I’ve got this.”  The last little bit was really difficult. Both Katie and then Holly, the APN on duty, helped Charlotte strategize how to approach the tape.

Finally, she got all worked up, “I can’t do this. I’m never going to be able to do this.” Then silence, then “Oh, it’s out.”

She did. The sushi is here. Have a good night, ya’ll.

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Charlotte heads home wearing sweat pants and fancy boots. Best combination ever. (Caption credit: Charlotte)

 

 

 


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Medical Update 5 Days Post Surgery (#CHDAware)

Current status: Charlotte that her current status is “Awesome as usual.” Clearly, her ego has recovered 🙂 She’s weaning herself from all things “i” and spent the morning on a craft project sent by a most excellent pair of twin 10 year olds. They also sent stuffed versions of what Charlotte misses most from home.With Ty Fred and Ginger

 

 

Medical update: The writing of this blog post was interrupted for…the removal of the chest tubes! Charlotte was a bit anxious about it so we medicated her. The Versed kicked in right after the tubes came out so she is blissfully listening to Taylor Swift right now and telling me how good her lemonade is.

After chest tubes were removed, Charlotte had an x-ray. She needs an echo. With normal results on those two things her central line should come out tomorrow and then we get to go home!

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Let me check out my lung x-ray. I can see the wire around the conduit. Cool. (Umm….no comments about my bed head, please!)

In the meantime, she’s been taking bigger and bigger walks. One big goal was to visit the Founder’s Board Treehouse on the 12th floor.DSCN1220

 

Mission accomplished! Lindsay, the APN on duty today, believes Charlotte won’t remember this visit or photo, so we’ll go again later.

We’re down to Lasix once a day, baby aspirin, pain meds as needed and Miralax. While she will go home with a few meds, nothing is long term.

On a sad note, Bubba’s nose is falling off. We’ve had to call in reinforcements. Introducing “the spare bear.”

DSCN1215Today’s cheery update brought to you by the “Flock of Docs.” That’s Dr. Backer all the way to the left. He’s pretty happy about today’s news!

Flock of Docs